New tripple negative - need advice
Comments
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Hi everyone,
Just got a confirmation, my mum falls into the tripple negative group as well. Thought that it wasn't a bad thing initially..Her tumour is 2.5cm, with 1 lymph node involvement. It's grade 3, and she is given a stage 2b. Being diagnosed with BC is stressful, and after doing the research on tripple negative, it makes me very nervous.
We need to decide on the treatment plan. Our oncologist suggested 6 sessions of the TAC regime, Taxotere + A/C, 3 weeks each time followed by a 25 times radiation session.
I need advice, reading through the articles about the tripple negative, i know it's important to maximise our chances during chemo.
What do you think of the current protocol?
hope that you can give me some input.
Thanks a lot. -
Hi Jason,
I am also TN. Your mom's dx sounds just like mine. TN is very agressive. I had 4 rounds of AC and 4 rounds of Taxotere every three weeks. I had a double mast so no radiation.
TN does have a higher incidence of recurreance during the first 3 years. Then the chance of recurrence goes way down unlike other breast cancers. I found Taxotere very hard to tolerate. Other had an easy time. but I have read it is more effective than Taxol.
It sounds like your mom is getting good care. She will go through a hard time. Encourage her to join the boards. I found it so helpful to bond with women who knew exactly what I was going through and to encourage me to keep on going when I did not want to.
Your mom will go through a gamut of emotions. Be patient and supportive. Sounds like you already are. The chemo and rads will make her sick and weak. Plan on helping out (bringing meals over, yard work, housework, etc.) If you have other siblings, get them involved as well. If she reads, buy her some books she likes. She will have a lot of down time. Or get her a subscription to Netflix if she enjoys watching movies. Just being there really helps. And when she complains, just know she is venting her emotions. She does not expect you to "fix" it.
Take care and let us know how she is doing and I hope to see her here soon.
Debbie
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Dear jason222,
I'm sorry to hear about your mom but I think it would be a good idea to get a second opinion about the protocol. I'm not quite sure if the oncologist suggested TAC given all together for 6 times every three weeks, but if indeed that is the case, I heard from my own oncologist that it is a very tough protocol (when given in combination). Several oncologists I consulted from some top cancer centers were recommending the sequence (either 4AC (preferrably dense dose due to some evidence of better efficacy) followed by 4T or 4T followed by 4AC every three weeks. However, I'm no expert in any way, and that's why I suggested that you get a second opinion about the protocol. You may want to ask why the combination was suggested over the sequential one and what is the research that supports its better results. Good luck with everything. --Christina
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Dear Negative3,
I am going to get a second opinion, but I am having a tough time in deciding which one to follow if their views differ. I will post here once I get a second opinion, and hope that we can share some of other triple negative experience and help me make the right one.
It's scary, thinking of the decision we make now will impact the likelihood of the survival chances, when we have no knowledge but to follow our gut feeling.. -
Jason, I'm triple-neg and TAC was my treatment. But I think she decided that route mostly because of my lymph node involvement.
Yes, it is frustrating to and difficult to try to decide these things.
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Hi Stef,
Was it a 3 weeks interval protocol? How tough was the chemo?
Good to see that there are many long term survivors here. I am wondering, since after chemo, there is no other medicine to take, what do most do to reduce their risk? Is there a change in diet and to increase your exercise regime? -
jason222,
Up until two years ago we all were treated with ACT dose dense every third week. Only recently doctors changed this protocol. I did this protocol while working pretty much full time. But I was 45 when diagnosed. Did they do a Muga Scan to check your mother heart before started this combo? That is usually the big thing with this mix. Yes it hard...but you don't have treatment draw out soooo long. I have friends in their sixty who tolerated this protocol very while,
Hang in there a little longer. After you get her in treatment, you will have a chance to search more and help her deal with her cancer journey, Please start reading about how to get through chemo with as few side effects as possible. There is a lot of stuff you can do that the doctor's do not tell you about until it becomes a big problem. BE proactive!
Let your mom know we are there for her.
Flalady
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I strongly suggest a second or even third opinion. There is lots of new stuff about triple neg coming out and one thing is that they believe that if you are over 50 with triple neg, then chances are it is not the basal type. The basal is the more aggressive type of triple negs. Not all triple negs are basal. Chances are great it is basal if diagnosed under the age of 50.
The other new thing I recently read is that taking Taxol on a 12-weekly schedule is just as effective or more effective than taking it as dose dense (every 2 weeks) or every 3 weeks.
I noticed they are trying to avoid using "A" in the chemo combo because of its long term heart side effects.
I did AC dose dense and only got through 3 of the 4 treatments. This is why they gave me 12 weekly. I worried it wasn't good enough. It's much easier on the body. But..appparently studies have proven it's very good.
I'll be 3 years out since diagnosis in September. I feel good. Oh..I was diagnosed when I was 50..3 months shy of 51.
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Jason,
Triple Negative here as well. I am sorry to hear about your mother and agree with Ravdeb about getting more opinions. I've also heard about the 12 weekly Taxol tx's which may be more effective than the dense dose regimen. I've also read that Taxol works very well with Triple Negs.
You are correct, Jason, when you state we must maximize our chances during chemo. Chemo is very important with any type of bc; and an aggressive Grade 3 diagnosis apparently responds very well to chemo.
When I was diagnosed, I was 39 (2006) and had 4 dense dose A/C, followed by 4 dense dose Taxol treatments and then had 33 treatments of radiation. Prior to all of this, I had had a unilateral mast, and then a prophylactic mast of my healthy breast one year later. My diagnosis is similar to your mom's - grade 3, Stage 2b.
If you have any other questions at all, please post them on the board here - the ladies are so helpful and knowledgeable - I don't know what I would have done without this site.
Raye
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Thanks for sharing your experience.
My mum will be starting chemo in about a week time.
Will need to get second or 3rd opinion and see what the other oncologist says. Didn't know about taxol being effective against triple negative, will be great if you can point me to some articles too.Does anyone has any idea what does p53 means? It's stated in my mum's report that she has strong positive for p53. Any idea?
And ravdeb, I didn't know about the basal type issue, any idea how we can check for that?
Thanks for all the feedback and help. -
Hi Jason,
I don't post much anymore, but your inquiry caught my attention. I'm also triple negative, basal cell carcinoma, although I'm 60 (it's not just younger women who get basal cell, alas).
My regimen has been Taxotere + Avastin X 4; then AC X 4. If your mom can get Avastin, that would be good. Some oncologists believe it will become a targeted treatment for triple negative breast cancer. That would be great since we have no other for the time being.
Best to you and your mom. Everything will be OK, you just wait and see.
Hugs,
Annie
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Jason -
Yet another TN weighing in on treatment schedules. I am getting 12 wks. of taxol and a investigational drug called "sunitinib" as I'm part of a clincial trial. Then I get 15 weeks of AC, followed by surgery and then radiation.
My cancer center believe very strongly about the effectiveness of the weekly infusions. They believe when the patient gets a mega dose of the chemo drugs and then has weeks to recover that the cancer cells also get a chance to recover. So I get smaller doses of taxol but more often.
May sure your mom sees an oncologist she likes and who is a good communicator. The oncologist should be available to answer all your questions, if he/she can't then find another doctor.
Good luck to you and your mum.
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Jason - I've been searching for some information for you. It sounds as though the taxanes and even platinum are being used. I found this on a UK site (you say Mum, so I am going to assume you are British - I apologize if I being presumptive).
Perhaps this site will prove helpful. Raye
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Jason-
The p53 is a tumor suppressor gene. p53 functions to eliminate and inhibit the proliferation of abnormal cells, thereby preventing neoplastic development. I have read that it is present in over 50% of cancers. Testing positive is considered "unfavorable". However, most oncologists do not take into consideration p53 because it does not change treatment or staging. However, when I tested positive for it I became somewhat obsessed with it. The more I researched about it online the more depressed I became. But then I met a young triple negative survivor who had been p53 positive and she is 11 years out. So...try not to fixate on it to much, maybe your onc will be able to tell you more.
Take care,
Natalie
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HI Jason,
Glad to see you are getting a second opinion. All the decisions are hard, but you need the information to make the right one for your mom.
I had dose dense (every 2 weeks) FEC x 4 then 12 weekly taxols. I believe there is an article on this site regarding the new usage of weekly taxols being a better benefit. Check it out or google it, it was within the last couple of months I believe. I noticed it because I got my treatments 4 years ago and wondered what my onc knew then. I think the weekly taxols are easier on the body,
What ever you both decide will be the right choice. Get all the info you can, sort through it and fully discuss it with your doctors. Then make your choice, and don't look back. Everyones path is different and what works for one does not work for all. We just go with the best we know.
Thinking of you, G
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Thanks for all the information.
Seems like quite a number of people went for the weekly taxol road for triple negative. Am currently leaning towards this route if this option is offered. Great to have this board to get more opinions from ladies who have been through this. It helps.
Not sure if Avastin can be offered as well since it's still currently undergoing trial.
And Raye, thanks for the site. I am from the South east asia actually.
CaNatalie, actually the doctor told me the p53 was a good thing, which means there is a gene that is supressing the tumor, but I am not sure how true it is as I can't find anything from the web. -
trip neg here i had AC and then Taxol 4 rds of AC every 2 weeks and 4 rds of Taxol every 2 weeks- i had a large tumor and many lymph nodes positive but will never know now but lymph nodes because I had chemo before my surgery- then i had a dbl mast and doc was thrilled i had the best response they could ask for - 100% there was no cancer in any of the 15 nodes they removed and no cancer left in my breast tissue when they removed it either
chemo is our best defense when we are diagnosed trip neg tumors react very well to tx
i was treated 2 yrs ago so they may have come out with new studies i know they are using taxotere more than taxol not sure why i would get a few opinions good luck and tell mom to come here often - this site was a lifeline for me and i continue to come here 2 yrs later
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Jason,
Avastin was approved for breast cancer in the USA this past February. Where are you located?
Best,
Annie
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Jason, yes mine was every 3 weeks. I handled it very well. But one thing I learned from these boards is everyone is different. Some breeze through chemo with no problems, some have a few here and there and then others may have multiple side effects. Like the bc, it's such a crap shoot as to how we'll do.
As the others have said, there is a lot of information here on this site. Here's a link to the research stuff:
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Hi Annie,
I am from South east asia, so not sure if Avastin is being offered here at the moment.
As the doctor did not offer us the choice of getting chemo before surgery, there is no way we are going to know if the chemo is working right?Do you ladies think doing chemo before surgery is important for triple negative?
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Hi Jason,
I had neoadjuvant chemotherapy (that is, chemo before surgery) in order to shrink the tumor. It was 4 centimeters when I was diagnosed. After chemo, it had completely disappeared and I was able to have a lumpectomy instead of a mastectomy. Although I had no idea how important that decision was at the time, I can't tell you the peace of mind I have knowing (not just hoping) I had the right chemo. Since chemo is the only systemic treatment option available to triple negatives, it's very important to get it right.
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Jason and CaNatalie,
I have been trying to learn about p53, too. As you both said, it is a tumor suppressor gene. The interpretation of p53 as a marker is in flux, as more is learned about it.
I have found a research paper that classifies as NORMAL tumors that stain between 1% and 50% positive for p53. Zero p53 staining or greater than 50% p53 staining of a tumor would be ABNORMAL.
This is the link: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2397529.
The normal/abnormal p53 cutoffs are listed in the section "Histopathological and immunohistological studies."[If a person can't make the tumor suppressor protein p53 (if they lack a copy of the gene that makes it, or have a defective/mutated gene), that isn't good. That's why ZERO p53 staining wouldn't be a good sign either.]
So, again, it is now considered normal for a tumor to stain up to 50% positive for p53 -- but Jason, if your mom's is above 50%, I would still insist to you that she is an individual, not a statistic. Maybe all triple-negatives stain high for p53, because triple-negatives are aggressive and aggressiveness triggers a lot of p53 production, trying to suppress the tumor growth. It may just be a circular kind of assessment, which may be why doctors don't have much to say about it at present.
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sometimes I really wonder, if it seems like the cancer has a high percentage of coming back, and there is no way whether we'll know if the chemo is working or not.. do we still want to undergo such torture when ultimately the percentage of chemo working is questionable..
Perhaps if it wants to come back, chemo won't make a difference or vice versa..sorry i'm feeling a bit down today, just sad to see my mum going through this with so many uncertainty and if our effort will be worth it or not in the end. -
Jason222 -
Sometimes all the information we are exposed to on the internet can be overwhelming and can do more harm than good. Every individual reacts to cancer treatment differently. Statistic's are only statistics and nothing more. No one knows how your mum will react to chemo but right now chemo is really a good tool for triple negatives.
I am having chemo before surgery due to my particular circumstances but it's quite common for people to have surgery first. If you really want your mom to have chemo first, talk to her doctor. I find it helps to be assertive.
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Jason, what if the cancer DOESN'T "want to come back"??!! Then chemo will make a HUGE difference, all the difference in the world, in getting rid of the cancer and keeping it from coming back! Triple negative cancers respond WELL to chemotherapy! Chemo is the only drug treatment available against triple negative cancers, but they do respond WELL to it. And after 3 years of no recurrence, the probability of recurrence drops off enormously for triple negatives!
Your mother is only stage 2!
I understand your fears and sadness -- but I really don't think the scenario has as little hope as you seem to be feeling today!
Your mother's diagnosis is not a death sentence -- and EVEN A RECURRENCE is not a death sentence. Recurrences are treatable.
Jason, I personally know 2 women -- one was in her 30s, one in her late 40s -- who thought "chemo is too much torture" -- they both died, and I think both were treatable. The process of their dying was NOT easier or less torturous than chemo!!!!!!!!
I'm sorry if that seems harsh to say -- but I think many people, even a woman doctor I used to work for (!), seem to think that refusing necessary chemo will give them a disease course that is LESS painful than chemo! But that is not true! When I spoke this intensely to the woman doctor I worked for, she said, "Of course, you're right -- I hadn't really thought of it that way before!" I think chemo gives your mother hope.
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Jason,
It is so worth it. Sure I didn't feel good for awhile and I was tired much longer than I had hoped. Now I am 4 years out from treatment and in that time my oldest son has been married, my daughter just had twin baby girls and my youngest son met a girl he really likes. If someone said to me today we have to give you chemo, so you will live 4 more years- I would do it!!!!
Every day that I get I up I feel like I was given a gift.
I remember asking my surgeon at my initial diagnosis appointment what would happen if I chose to do nothing. She said, " Oh, you don't want to do that. Women who have made that choice have a difficult time and they come back and want to do chemotherapy, but it is quite late in their illness."
Your spirits will go up and down on this journey and that is okay. It is normal. One thing you can count on is that every anxiety wanes with time. It will resurface, but it will just as surely go down again.
Be sure to take good care of yourself. Do something relaxing or fun. Its okay to take a break from the cancer.
Warmly,
Sadie
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Hello,
Jason-I hope you are feeling better and finding some good fighting spirit. We all know how hard this is. But the ladies are right...you can do this and so can your mom. All of us react so different to chemo, your mum might be able to handle it a lot better than you think. She is so lucky to have you by her side, and that will definitely be a great asset for her during those hard times.
Anne-Thanks for the info on p53. All this information can be so confusing. I tested 90% on the p53 test. From what I understand, a lot of doctors don't even test for it because most of the research is old or changing and it doesn't change treatment. I really agree with you on the treatment outlook.
Sadie-As always, so well put. Hope you are doing well.
Take care,
Natalie
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Jason,
I understand your concern about the cancer coming back despite treatment. We all have this fear in our hearts, because it could actually happen. But it is not at all a given that it will come back. The best weapon we have to beat triple negative cancer is chemo and stage 2 is still treatable. If your mom happens to have a good response and her tumor significantly shrinks or disappears (not uncommon for 3Ns), her odds for survival are very good. For more info, listen to the podcast of the June 4th Medical Update on Triple Negative Breast Cancer. Here is a link:
http://www.cancercare.org/get_help/tew_details.php?tew=breast_060408&ret=/get_help/help_by_diagnosis/diagnosis.php&origin=sendpage
Of course, chemo is no fun, but it is quite doable for most people. There are really good meds that control the side effects. It's not at all like it used to be or like it's portrayed in movies. Six months or so is a small investment for getting a chance at having a nice long LIFE! It goes by quicker than you think and hair will grow back. Sorry to be so opinionated, but the more I learn about 3N, the more I realize how important it is to treat it agressively. AnnNYC and Sadie-Rose are right. It's SO worth it.
I hope this helps. I send my best to you and your mom.
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Hi everyone,
Thanks for the encouragement and support.
cherantia, my mum already did her mast. so there is no way we'll know if the chemo will be working or not.. we were not offered this option before the mast. We only found out that she's a triple negative after the result is out from the surgery.
I just went for a second opinion, and this time the oncologist suggested 6 FEC or the FAC regime, 3 weeks each time.
I am worried, not sure where to seek help from, as the oncologist here is perhaps not as up to date as the US counterparts.
What should I do? I cant suggest on the regime of treatment to the oncologist, and I know i can only find an oncologist who we can trust. But we do not know who to trust. I am going for a 3rd opinion, but am worried that I could not find someone who is well versed with the triple negative or is up to date with the latest treatment protocol. My mum is scheduled for chemo next week, and we have to make a decision soon.What should i do? Should i get help from someone from the US who can help coordinate the treatment plan over here in my place? I am confused, and yet financial constraint is another element that we need to think of. Any ideas?
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Jason, you might also check out the site tnbcfoundation.org. It's just triple negatives, and you might hear of some different options there.
I am metastatic and have just been treated with carboplatin and taxotere with great results, but some doctors who treat triple negative are giving platinum drugs as adjuvant therapy, because triple negative tumors have shown increased response to these drugs (carboplatin and paraplatin.)
Avastin has only been approved in the US for first-line metastatic treatment so far, in combination with a taxane, and it has just been denied in the UK recently, so I doubt if that is an option.
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